When the Going Gets Tough...the Tough Get Going

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” — Lao Tzu

The quote above comes to us thanks to Ken on NB Dogma. It is perfect and he offered it up to us at just the right moment. 

This is just a quick overview before I get started on my day.

Monday we met with the junior doctors on the Oncology team at my insistence because they come around in the morning when I am not there and Les' head is fuzzy from the Oromorph so he cannot remember everything they tell him. I had a couple of pertinent questions I wanted answers to so I emailed the team liaison Monday morning and requested a meeting when I arrived at hospital. The conversation went like this: 

Two consultants showed up at Les' bedside hemming and hawing about “possible bone thinning cause by the first five days of radiotherapy Les underwent back in 2013." 

I asked, “So Les had a second MRI this past Saturday. Did it show anything different from the first MRI he was given at Stoke Mandeville hospital on August 2^nd?” 

“Nope,” both consultants shook their heads, sad faces moving in unison. 

“So why is it that Mount Vernon is dragging their feet on getting the physics data over to you folks? Should someone else contact Mt. Vernon and see if a fire can be lit under them?” (The physics data is I am told, the actual fractions of radiation Les was exposed to each day back in 2013. This has been the main stumbling block for the oncology team at the RFH for four weeks now, so we were told. Supposedly Les had close to 43 fractions and 45 is the limit so there may well be nothing they can do for Les short of chemo which he will not do as it does not cure anything but can certainly kill him quicker than cancer will.)

“Oh, well no. We’ve brought in a bone specialist from Stanmore to review all of your husband’s scans and his file. What we are seeing is something that we cannot quite pinpoint and without knowing for sure what we are seeing we cannot safely go ahead and give your husband any more radiotherapy to ease his pain.”

“What do you mean by the term ‘…what you are seeing?’ I thought the MRI was a definitive answer that this is bone mets from the colorectal cancer, which should rule out the bone thinning you all thought might be the case. Are you seeing something else?”

“Well.......there is a possibility what we are seeing is another type of cancer in the area.”

“What type of cancer do you suspect?”

“Well.......sarcoma, but that is very rare and we don’t understand how it could be there.”

“Ah, well Les was required to sign a statement before undergoing the five days of radiotherapy at Mt. Vernon which stated he understood that the treatment could case second line cancer at some point in the future.”

“Oh no, no, no. no, this couldn’t possibly be caused by his treatment.” And then they left.

I knew there was something we weren't being told! I could not figure out why we had been given the same vague statement repeatedly for over a month and a half now. At some point the Oncology team at the RFH knew what they were seeing was in all probability a second line cancer and they were stonewalling us until they had a more exact answer. This is the problem for patients you see. If you don't know which questions to ask, then you will never get a direct answer. It was my probing question about the MRI’s showing no differences and my pinning them down with their own answer: nope. No change; well then doesn't that mean we have a definitive diagnosis of bone mets? which backed them into a corner and made them come clean with their exact concerns. 

The trouble is patients don't know what to ask, so they seldom get the answers they need until the last moment when the Oncology team is assembled and ready to rush the shocked and dazed patient into the treatment modality.

Monday evening I was told a team meeting had been scheduled for 1 pm Tuesday so I arrived early to be sure I didn't miss it. Les and I discussed the questions and concerns we wanted raised so Les was ready. They finally came around at 4:30 pm. The same two women consultants as yesterday and a new face--a man, presumably he had more authority???!! The man whose name is Todd, said: 

"We've reviewed all the scans, and we've called in an orthopedic specialist from Stanmore hospital to review them. We are still waiting for the information from Mt. Vernon but the folks from Stanmore are on the case now as well so we should have it soon. We suspect what we are seeing is a second line sarcoma and we need to be sure." That last statement was slipped smoothly in on the end. 

Les:" A biopsy to my spine has been mentioned. What good will that do me? If it is bone mets or sarcoma what difference does will a biopsy make?"

Todd: "Well it will make a difference in how we treat it, and in what medicines you are given."

Les: "What do you mean by medicine? Do you mean chemo? Because I won't have chemotherapy."

Todd--taken aback by Les' statement--as if he had offered Les a lifeline and Les was choosing to throw himself off a cliff instead: “Well, it is too early to make any choices about treatment yet when we don't know exactly what we are looking at. So let's leave this conversation for another time. We are going to discharge you tomorrow. Once we have a definitive answer from Stanmore we will be in touch and you can come down for a meeting with us so we can get treatment underway." 

As it stands now we are likely looking at cancer caused by the treatment given to Les to "cure" his cancer to begin with. But Oncologists see no illogical fallacies or discrepancies in this scenario. They shrug their shoulders and tell patients: "it happens sometimes." Good luck getting any accurate stats on how often "sometimes" occurs. Death caused by treatment is known as iatrogenic death. Those figures are folded into the general cancer death population figures which handily obscure the actual facts. Just remember though...currently fifty percent of all cancer patients die, supposedly of the disease...

Sunday was a very tough day for me. It is the first day since we knew for a fact Les was dying of cancer that I was on my own on the boat. It was a harbinger of all the days waiting out there ahead of me after he dies. I spent most of the day crying in fits and starts, although it started off brilliantly with a visit from single handed boater Kath of NB Bobcat. She is heading south, coming down from Chester and has been looking out for our boat all along the way! She breasted up next to NB Val and had a cuppa with me. Kath cried as we talked about Les, tears spilling out of her lovely pale blue eyes. I was okay until I read Les’ blog which he posted late Saturday night. Anyway I am making a list of topics to write about when Les is gone; widowhood things like “First kill your own spiders,” and “Jackie O Sunglasses.”

I received a wonderful email from one of my Hospice instructors formerly of Pullman. She is a brilliant and compassionate teacher. She follows our blog but never comments. She sends brief emails when her support counts most and they are a deep and resounding hug from afar. Here is what she said: 

As you know, dear Jaqueline, all is well at the deepest level, and I am grateful you know that love transcends death. May the days you and Les yet have together "on the boat" be brilliant, blessed, beyond the moon. And may he go gracefully, peacefully forward...

much love,

N

I washed all the curtains Monday and hung them back up to dry while I was gone to London. Tomorrow I will wash all the throw blankets and yesterday I washed all the windows, the boat roof, stern area and well deck in the front. Les may return and find NB Val unrecognizable! It has been months since we’ve had the time or the energy to do anything other than the most basic daily chores.  

I must go now and get myself sorted before heading out on today’s journey down to the Big Smoke. My baby is coming home today! We will sit on the bow in the sunshine and sip our iced coffees. I will fix steak fajitas for dinner tonight. Tomorrow Mike W. is taking me to Tesco’s and we will have roast chicken dinner and fresh apple pie and watch movies on Netflix, while we come to terms with this current scenario. If the weather holds we will cruise off somewhere quiet for a couple of days and begin going through the boat from stem to stern, while I make notes of every system on board, how it works, what parts are involved with part numbers, and sources, and what things to keep an eye on; any maintenance invovled and how to go about doing it.

In the meantime I offer my deepest gratitude and thanks to everyone who has commented on Les' post with such great love and friendship. Deep thanks as well to the boating community--both locally and spread out across the cut, for letting me know in an unobtrusive but loving manner that we are cared for and watched over; that someone is available if and when we should have a need. What you offer us is priceless. It is the true face of loving kindness: humble words and deeds in time of greatest need. Much love to our family on both sides of the world, for staying strong with us on this toughest of journies.

Love Jaq aka Momma/Mim/Nanny Jaq xxx